Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry

Dicianno, Brad E.; Karmarkar, Amol; Houtrow, Amy J.; Crytzer, Theresa M.; Cushanick, Katelyn M.; McCoy, Andrew; Wilson, Pamela E.; Chinarian, James; Neufeld, Jacob A.; Smith, Kathryn A.; Collins, Diane

doi:10.1097/phm.0000000000000404

Cited by 65 publications

(59 citation statements)

References 24 publications

(22 reference statements)

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“…Publications to date include a paper describing the methods to implement a registry to collect data [2]; a description of the initial registry participants [3]; an investigation of the association between sociodemographic characteristics and patient outcomes [4]; and identification of factors associated with mobility [5]. A description of the methods for developing and refining a urologic protocol for newborns and young children with spina bifida has also been published [6].…”

Section: Methodsmentioning

confidence: 99%

The National Spina Bifida Patient Registry: Past, present, and future

Thibadeau¹

2017

PRM

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“The National Spina Bifida Patient Registry: Past, Present, and Future” was presented at the Spina Bifida World Congress, March 17, 2017, San Diego, California. This commentary provides a summary of registry activities including the reason for development, a description of the clinic participants and their patients who are participating, analytic works and publications. Two specific efforts that are related to the work of the registry, a urologic protocol to preserve renal function for newborns and young children, and a skin breakdown prevention bundle developed and implemented in registry clinics, are highlighted.

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Section: Methodsmentioning

confidence: 99%

The National Spina Bifida Patient Registry: Past, present, and future

Thibadeau¹

2017

PRM

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“…A secondary goal of the NSBPR was to establish an infrastructure to support SB clinical research. 7–11 …”

Section: Methodsmentioning

confidence: 99%

Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida

et al. 2016

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Purpose Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown. Materials and Methods In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years. Results An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol. Conclusions The Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on urinary tract infections, renal function, renal scarring and clinical process improvements.

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“…1 Almost 6000 affected infants were born in Europe between 1991 and 2011. 1 Almost 6000 affected infants were born in Europe between 1991 and 2011.…”

mentioning

confidence: 99%

“…1,4,6 Doctors, parents, and health care planners want to know if children with a disability, such as spina bifida, will be able to look after themselves in adulthood. 1,4,6 Doctors, parents, and health care planners want to know if children with a disability, such as spina bifida, will be able to look after themselves in adulthood.…”

mentioning

confidence: 99%

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Walking and living independently with spina bifida: a 50‐year prospective cohort study

Oakeshott

Poulton

Hunt

et al. 2019

Develop Med Child Neuro

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AimTo describe trends in walking and living independently in a cohort of consecutive cases of spina bifida, followed‐up over 50 years.MethodFrom 1972 to 2017, a cohort of 117 (born 1963–1971, 50 males, 67 females) survivors and/or carers was surveyed approximately every 5 years by clinical examination and/or postal questionnaire/telephone interview. The Office for National Statistics provided details of deaths.ResultsThe follow‐up in 2016 and 2017 was 99% (116/117). There were 37 survivors (17 males, 20 females) aged 46 to 53 years and 79 deaths (50y survival, 32%). The percentage of survivors who could walk more than 50m at the mean ages of 9 years, 18 years, 25 years, 30 years, 35 years, 40 years, 45 years, and 50 years was 51% (38/75), 50% (34/68), 33% (20/61), 30% (17/57), 30% (16/54), 30% (14/46), 31% (12/39), and 27% (10/37) respectively. However, the percentage living independently in the community after age 25 years increased over time: 23% (14/61); 37% (21/57); 41% (22/54); 39% (18/46); 56% (22/39); and 54% (20/37). Living independently at age 50 years was more common in survivors without a history of raised intracranial pressure or cerebrospinal fluid shunt revisions.InterpretationIn this unselected cohort, mobility declined with age, possibly because of increasing obesity and deteriorating health. By contrast, partly because survival was better in those least disabled, the percentage living independently increased.What this paper adds By age 50 years, the percentage of patients who could walk more than 50m had declined to 27%.By age 50 years, the percentage living independently had doubled to over 50%.Survivors without a history of raised intracranial pressure or cerebrospinal fluid shunt revision are more likely to live independently.

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Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry

Cited by 65 publications

References 24 publications

The National Spina Bifida Patient Registry: Past, present, and future

The National Spina Bifida Patient Registry: Past, present, and future

Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida

Walking and living independently with spina bifida: a 50‐year prospective cohort study

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